Life in the fast lane! I'm taking life one day at a time and doing my best to keep an attitude of gratitude for my (many) blessings! Life throws us unexpected curve balls and it's up to us to decide how to react to each one. We may need to adjust to a "new normal" on a regular basis!

Wednesday, June 25, 2008

Procrit injection #3 went well. Last week Ron started on an additional diuretic and today he was down about five pounds from last week. That is a good start.

Dr. Peterie was next and he had some good news for us. The MRSA is gone and the only thing left is some skin bacteria that we all have. Ron does have Thrush though so he gave him a prescription for it. He still wants Ron to continue the antibiotics while he has an open wound. The wound is still over 3 cm deep.

Dr. Heady was very impressed with the improvement in the foot. We had been concerned that he would suggest more surgery on the foot but he decided that he wants to hold out a bit longer to see if it continues to improve. He said the tunnel is healing in most of the areas but still has the one deep spot.

The tech re-dressed it and we go back in a week-and-a-half to see Dr. Heady; we see Dr. Peterie in one week. Procrit injection also next week.

This past Sunday in church, the closing prayer included prayer for those in the church who had any type of need that it be met - financial, emotional, spiritual, physical, etc. One of the specific things mentioned was "checks in the mail" and another was "inheritance not planned on."

On Tuesday we received not only a check in the mail, but also an inheritance check that was not planned or expected. When Ron's step-dad died in 2004 he owned a full-sized van that had been converted to a handicap accessible vehicle, complete with an electric ramp. Gene (the step-dad) was a bilateral amputee so this was a great thing for him to get around in. It was set up with hand controls and since the ramp was electric, all he had to do to raise or lower it was to flip a switch. Ron's sisters offered it to us after his first surgery in 2006 but it was in Florida and we were not. I didn't want to drive or fly down there to get it and then have to drive it back.

They ended up taking it to Arkansas when one of his sisters moved there, thinking they'd use it with his mother. She had been in a nursing home in Florida and they decided that she could go live with the oldest daughter in Arkansas. That lasted less than a week and she was looking for a new nursing home to place her in. I had tried to tell her that mother was a lot more work than she realized and taking her to AR was a mistake. (It ended up being a big mistake that cost the siblings thousands of dollars from her annuity because AR does not look at property the same as FL so her nursing home expenses ended up coming out of pocket, instead of being paid for by Medicaid and Medicare.)

When Ron's mom died last year they asked again if we wanted the van. We still did not. Although it was closer now, in AR, we just didn't think it would be a feasible thing to get, have to maintain (the lift needed some work), and it got terrible gas mileage. They finally decided to put it up for sale and last week they sold it.

The asking price (to us) would have been technically "free" but would cost us money off of any inheritance they received (no one ever said a price). We just didn't think it was worth the trouble. They put it in the paper for $2500 and they were offered $2,000 for it.

When the buyer tried it out, the lift wouldn't work at all so he only paid $1700 for it. After expenses, each sibling received $538.00

That was check number one.

Check number two came in the form of a life insurance payout that no one was expecting. We knew there were a few small policies ($1,000 - $2,500) but not entirely sure about who had them or anything else. My SIL had told us about a policy she was trying to get information from but did not say she'd received anything. We received a check for $718 from the insurance company and the information on the stub said it was his share of proceeds as a co-beneficiary.

Those two checks absolutely made the difference between us making it this month and us not. After I paid all of our expenses for the month, I had less than $100 left and that had to go for any additional medications we need (two of mine are $30 each and I was out), gasoline, food, and doctor co-pays ($20 each). No matter how I added it up, $100 wasn't going to cut it.

Now we have enough to pay our bills, buy the groceries, pay the co-pays, get gasoline, get the medications - and still have a bit of cushion in the bank for next month. We're also buying a scooter hitch for the back of his car but I'm trying to find the best price for it. The cheapest I've found for his Class II receiver is $485 and that is on eBay. Locally, $950. Ouch!

So - did we experience a blessing or coincidence? Personally, I believe it was a blessing - and a blessed coincidence.

Friday, June 20, 2008

Ron’s had two Procrit injections now. I had to look Procrit up because I wasn’t sure what it was, except that I knew it was for anemia; in fact, I didn’t even know it was Procrit he was getting as the office referred to it as “epo.” His hemoglobin was around 9.1 and the doctor said that for him, it should be between 14 and 15, so it was quite low. She said he was the equivalent of three pints low on blood. It’s no wonder his color was gray and he had no energy.

His weight for the past three weeks has really fluctuated. When he was discharged from the hospital on June 3, he weighed 254 and weighed 252 the next day at home. Last week (June 11) at the doctor’s office he weighed 264, which is a big jump in just a little over one week. They had drained a lot of fluid off of him in the hospital (he was admitted at 272 on May 30) and he was really dehydrated and week when he came home.

On our scales on June 18 he weighed 272; at the same doctor’s office but a different scale than the week before, he weighed 274 and that concerned the nurse. She had him go see the nephrologist just to make sure he wasn’t headed into some kidney or heart failure again. She was a bit concerned but only because if he continues on an upward spiral, then he will for sure go into heart failure again as his heart will not be able to keep up with the fluid retention.

She could see pitting edema in his legs and his right foot was really swollen. He said he felt good and had more energy (his hemoglobin was up to 10, which was good) and his color was better. She gave him an additional diuretic to take to help get some of the fluid back off. This week he’s to take one every day, next week he’ll take one every other day for three days and then stop. He’s to check his weight every morning and at the end of this two week period she wants to know what his weight has done. If he loses too much in one day (didn’t really say what too much is though) or has any other problems, he’s to stop and call her. This drug flushes potassium out so she wants him to eat a banana or drink orange juice every day. That’s really a switch for him since those have been banned for months.

Yesterday he weighed 268 and this morning was back to 272. He’s been eating pretzels as a snack, even though I’ve told him they are not something he should be eating (I didn’t buy them for him, either). He has justified it by saying that he’s “hungry” and doesn’t know what to eat. Well, there is fruit in the fridge, there is a container with cut up celery and cucumber slices, there were baby carrots (we finished them last night) and there are frozen vegetables in the freezer. All he has to do is choose those instead of the other stuff.

Last night for dinner I fixed tomato slices, asparagus, and catfish nuggets. The catfish was nasty and neither of us could eat it so I tossed it. I ate more asparagus, added some celery and cucumber slices and left it at that. Ron ate his tomato slices, a few cucumber slices, and one piece of celery - and then came back into the kitchen for more food. He didn’t want more “good stuff” and instead fixed himself a toasted bun with peanut butter and jelly, and then a ham sandwich with Swiss cheese.

I told him this morning that I wasn’t giving him a hard time, but I’ve done all I can do for him and he’s got to start making better choices when he’s hungry. I said the ham has too much sodium in it. He said “but it’s low sodium ham,” to which I replied that it’s LOWER than regular, but not LOW. We actually had this same discussion last time he wanted ham (this stuff is $9.00 a pound).

I know that it’s a lot of sacrifices for him and it’s not any fun. But, I’m making the same sacrifices. I’ve cut out all of the stuff that he cannot eat from my diet as well. I was hungry last night, too but I chose to eat more veggies instead of things that I knew would raise my weight and/or sugar (I was down 2.2 pounds this morning). Those are things that he’s got to take into consideration. (I know I need to go to the grocery store but couldn’t until payday, which is today. I cleared about $300 less than usual because of his medical appointments for the past two weeks – and no matter how you slice it, that hurts the bottom line. I have to pay bills and then see what is left over. Until July 1st, there is going to be slim pickings at our house and we all just have to deal with it.)

On Monday, June 16, he saw his foot doctor. The hole is getting smaller in circumference but not any shallower. In fact, it may actually be deeper. It’s hard to tell because different people measure it differently each week. We’ve been told the main hole was a little over 3 cm and had healed up to about 2.7 cm. Another time, the hole was fan shaped and one area was 1.9 cm and the other was 2.5 cm. Now, there’s a channel with a deeper hole that measures 4 cm and the shallower part measures over 2 cm. We’re just not sure but we do know that it’s not getting any smaller.

Dr. Heady says he’s at a loss as to what to do next. We’ve done everything that he’s instructed us to do. He is hesitant to go back in and re-open it to do another debridement but he may, in fact, have to do just that. Our next appointment with him is on June 25. Ron will have his Procrit injection first, then see Dr. Peterie (infectious disease doctor), and then go to Dr. Heady’s office. Dr. Peterie cultured the wound this past Wednesday so maybe he’ll be able to tell us if the MRSA is gone.

On the 26th Ron will see Dr. Francisco and find out what the heart tests revealed. We do know that his ejection fraction is only 40% (normal is 70%) so not sure what the next course of action will be for that.

I think he’s a bit depressed over it all. He’s been off work since early February and worked only sporadically from December until then. He’s out of FMLA for the year, he’s almost out of medical leave (supposed to return to work on August 1), and sees no end in sight. We have applied for social security disability for him but at the earliest he would get any money is mid-August. That is if he is approved with no problems and I’m sure social security does not work that quickly. The short-term disability payments he’s now receiving through his employer will cease before then. And, if they get wind that he’s trying to retire they’ll probably stop them anyway. It’s quite the mess.

Monday, June 9, 2008

It's a path you either choose to follow or not. It's not something that's handed to you. It's not earned, nor can it be bought. You have to choose to be happy.

Most days I would say that I choose to be happy. I put on my happy face and march into work. When people say "hi" to me and ask how I am, I genuinely smile and reply, "I am fine." They do not know that it's sometimes an effort to project happiness when troubles are on my mind.

This does not mean that I don't have a down day every now and then, when projecting that happiness is virtually impossible. I can't think of anyone who could say they've never had a down day. I definitely have my times of despair and no one knows just how deep those feelings sometimes run (except for my mother, who lived this type of life with my father). I have become very adept at hiding behind a facade. The walls around me have been built over the years for my own protection and I'm reluctant to let them slip.

Sometimes I let someone in and a little chink of that wall comes tumbling down. Oftentimes, I'm sorry that I let them see the part of me that hides. At those times, I rebuild the wall, stronger and thicker than before.

I try to do the best that I can to remain upbeat and happy in the face of extreme trials and tribulations, but sometimes it's just too much for me to handle.

I think I might have been happier if I'd just left myself be the silent mouse who makes no noise and does not stir the pot. It's easy to go unnoticed as I've done it most of my life. I've lived in the shadows for so long that it's hard to come out into the open, but I made the effort. I'm just not sure if it was worth it.

I ventured out in search of friendship and although I thought I had found it, I discovered I was mistaken in more ways than I care to admit. I have made a lot of new friends in the last year, but most of them are online and we can only communicate via email. Going to lunch, sharing a pot of tea, or just visiting in person are all things that are as elusive as fluttering butterfly. There are times when I really want to be included, but I don't interject myself into a situation where I don't know if I'm welcome or if my prescence will be unwelcome. Good manners may let someone include me but it might be obvious that my presence is still less than welcome.

It had been somewhat of a foolish dream on my part to think that I had value to people outside of my immediate family and long-term friends. I decided it was time to face reality and choose my own happiness. It cannot be dependent upon what others think of me, say to me (or not say to me), or any other outside influence.

I can again return to the quiet, unassuming persona I have been for most of my life. I choose to be happy and I will be the author of that happiness. I can participate from a distance and be content. I have my faith in God, which sustains me in all things. I have my family, my children, and my grandchildren whom I love with every fiber of my being. I have my online friends in far away places (and they know who they are) and those in not so far away places. That will be enough and I will be satisfied in the place where I am.

I don’t know what is up with me today. I’ve gotten plenty of rest in the last few nights, I’ve lost a bit more weight, and Ron is feeling a bit better. But, I find that I’m a bit melancholy today. Maybe the whole health crisis of the past four months has started to take its toll on me.

We bought our furniture last year on a “12 months same as cash” program, with the intention of paying it down (or as close to off as possible) because we thought Ron was going to be getting an annuity settlement from his mother’s estate. I really should have known better than to plan on something that hasn’t happened yet. The settlement didn’t happen until this year, and then it wasn’t a bulk amount but monthly payments. Since he’s been off work I haven’t be able to pay anything on any debt other than the minimum payment. Then we found out today the annuity payments may be held up in red tape or stopped altogether because his niece believes her mother is suffering from dementia. This is the sister who gets is responsible for the disbursement of the funds.

I just realized last weekend that the 12 months was surely nearly up or even completely up by now and we hadn’t seen a statement in months. I got a really sick feeling in the pit of my stomach because of the extra financial burden we have put ourselves in. I called them today and found out that the 12 months is actually up tomorrow. Since we can’t pay it off in full by then, the added interest is $1400 – give or take a few bucks at 23% interest. I know, I know – I can hear it now…. Just what were we thinking??? I hate buying things on credit and I have really developed an aversion to it. I have more debt on credit than I’m comfortable with and now I’m having trouble seeing the light at the end of the tunnel (unless it’s a train bearing down on me).

I talked to the finance company and they’re willing to refinance the note, but they want to also attach Ron’s vehicle and pay off a credit card. That would extend what we’re paying by over two years (making it a five year note) to save us about $200 per month. We just don’t want to do that. Stretching ourselves now for two years is better than dragging it out for nearly five. I’m going to decline, especially since the interest is higher than it currently is on the vehicle and the credit card.

We made some bad financial decisions based upon flawed financial advice and now we’re paying for it. I don’t know what the outcome will be but I can honestly say this is the first time I’ve felt really down about the whole situation.

If we could refinance the house and get enough equity to pay off some things, that would be good. I just don’t know if it would be beneficial or hurt us more in the long run.

I think this is actually the lowest point I’ve been in this whole thing. Ron is very weak and he’s unsure of his future but he’s pretty certain that returning to work may not be an option.

This may all be a moot point if the IRS comes knocking on our door. I would hate to think they’d attach our resources without some kind of warning or dialog first, but it’s impossible to tell with the IRS. They seem to think they’re above the law.

If I had had even the tiniest inkling that things would not be as planned, we would still be living in our other house making do. We would be less in debt and not owe the IRS any money (we would not have cashed out Ron’s stock). Yes, the other house would have been much more difficult for Ron but the payment was less and the overall expenses would have been less.

I keep hearing the words to Dolly Parton’s version of “Hello God” in my mind:

Hello God, can you grant usLove enough to make amends(Hello God) Is there still a chanceThat we could start againHello God, we've learned our lessonDear God, don't let us goMore than everHello God, hello, helloHello God, we really need youWe can't make it without you(Hello God) We beseech youIn the name of all that's trueHello God, please forgive usFor we know not what we do

Hello God, give us one more chance to prove ourselves to youHello, God; hello, God

Hello God, can you grant usLove enough to make amends(Hello God) Is there still a chanceThat we could start againHello God, we've learned our lessonDear God, don't let us goMore than everHello God, hello, helloHello God, we really need youWe can't make it without you(Hello God) We beseech youIn the name of all that's trueHello God, please forgive usFor we know not what we do

Hello God, give us one more chance to prove ourselves to youHello, God; hello, God

I don’t know who wrote it, but it’s a beautiful song and sadly, somewhat appropriate for the current state of affairs around here.

Thursday, June 5, 2008

It looks as if I’ve managed to lose between 20 and 25 pounds now. I say between because I’m not entirely sure where I started. Like most people, I managed to gain a few pounds (OK, more than a few; more like several) over the winter even though my plans for life did not include gaining weight. I can’t say I know too many people who have that goal.

I do know that I’m a bit lighter than I was at this time last summer because several of the things I bought for last summer are now too big. That’s really a sad state of affairs. LOL, not really. I’m thrilled with that revelation. I will be very happy to donate them to our church garage sale.

The funny thing is that no one at work has noticed. I see some of them looking at me oddly, as if they’re trying to figure out what is different about me. Is it my hair? Could it be new glasses? (Sometimes I wear them, sometimes I do not.) I wear such loose clothing that it’s really difficult to tell what my shape was (round is a shape) and what my shape is now (less round).

I’ve bought a few new shirts, a pair of jeans, and a couple pair of Capri pants in the next size down. They fit but not as loose as I would like so I’ve only worn one outfit. I’ll wait a few more pounds until I wear something else.

I may even wait until I need the next size down (that would be about 10-15 more pounds) before I wear the new size I bought. The size in the label only bothers me slightly. I have several things that are from the same manufacturer (such as two blouses, identical except for the color) and one could be one size and another a different size. There’s no rhyme or reason to it.

Of course, the new eating plan we’re on is helping a great deal. We don’t eat out much (too expensive and too hard to find things that Ron can/should eat) so I’m cooking more at home. I’m choosing more healthy fare for us and I’ve cut way back on the sodium, not just for Ron but for me also.

The other factor that I think is helping is lifting his scooter in and out of the car several times a week. Even taken apart, the pieces are quite heavy. One piece is 35 pounds.

When we go to our family reunion in a month I hope I’ve lost enough that my family is shocked, even with my loose clothes on. That will be a great reward.

Wednesday, June 4, 2008

If I live to be 100, I don’t think I’ll ever forget the telephone call I received at 9:15 am on June 4, 2001. “Looks like you’re going to have to come to Kansas City after all. Kathy’s killed herself.” The words stunned me. I had been sleeping a bit later because I’d gotten home late on Sunday evening from a weekend out of town but at those words I fell out of bed and was instantly awake.

I was filled with regret because I had spoken with Kathy the night before. She was “scheduled” for her first round of chemotherapy and a heart cath first thing Monday morning. Little did I know that her schedule did not include these procedures, but she had been meticulously planning her death and funeral for several weeks.

I have many regrets from that weekend. I was sitting at a service station on MO Hwy 71, just a few hours out of Kansas City. Up the road a bit, turning left at the intersection of KS Hwy 54 would take me back home. I was so close, so close, to not turning. To this day I can’t fathom why I did not just go straight.

I wasn’t working and my family didn’t really “need” me at home (two grown children and only one left at home, a teenager capable of fending for himself) so it would have been only a minor inconvenience to the for me to not go straight home.

Kathy had only told the family two weeks earlier that she had terminal cancer of the lungs, throat, and larynx. She was going to “try” the treatments the doctor wanted but because of a heart issue, he wanted to do a heart cath first. We spent Memorial Day weekend helping her get her house in order, get things that needed to be shredded taken care of, and sorting a lot of mail and documents. My youngest sister got her into her lawyer’s office for a quick will, “just in case” the unthinkable happened.

I had mentioned to Kathy when I had her on the phone that I wanted to come to KC since I knew she was going into the hospital the next day. I told her that since I was free for the summer I would spend a lot of time with her, taking her to doctors and being with her while she was sick. She said that was very nice of me but to not come yet as she didn’t have a need for a nursemaid at that time. I have wondered ever since if I had just shown up at her door what she would have done. Send me home? Not let me in? If she had let me in I would have known she was planning something because of the organization of her things, all the notes she had attached to everything, and the meticulous attention to detail she had taken (she had her funeral clothes hanging in the bedroom doorway, completely accessorized, and her funeral music cassette on the table).

If I had shown up, would she have delayed the inevitable, or done it sooner? Of course, we’ll never know but we do know she never had an appointment at the hospital; my guess is that she would have felt pressured to do it sooner.

My sister was such an amazing person and there’s not a day that goes by that I don’t miss her. There have been times when I’ve wanted to pick up the phone to give her a call and stopped just short of reaching for the phone.

She was 49 when she died, much too young to leave this world and those who loved her. The year I was 49 I wondered how she felt knowing that she’d never see 50. I wondered if my mother would worry that I wouldn’t make it to 50 also.

Kathy had no idea she was loved by so many people and the impact she made on the lives of those people. Her funeral was standing room only. Her pallbearers, high school students from her German class, unashamedly cried during the service and while they were carrying her casket. She had taught at the same school long enough that she had taught the children of former students. Both generations were deeply affected by the loss.

Her memorial table was filled to overflowing with things we had brought in to commemorate her life and give honor to the things she had accomplished. She accomplished more in 49 years than a lot of people would be able to manage in two lifetimes.

She left very detailed letters to us and explained her reasoning. As a Christian, she knew that suicide was wrong. But also as a Christian, she believed that God had spoken to her on more than one occasion, telling her that she was not going to survive any treatment option; if she wanted to take the short route home, He was waiting for her. How can I not believe we will be reunited in heaven one day?

My oldest brother is not one to openly show emotion. Stoic, as the oldest, he’s always felt like he’s had to be the strong one. I had created Kathy an account on one of the yearbook sites and it had a contact email address. My brother found her, why I don’t know, and sent her an email. I was so stunned to open her email inbox after her funeral to find “You didn’t give me a chance to say good-bye.” Of course, I cried as I’m sure he cried when he wrote it. He felt he’d failed in not protecting her.

She’d had an abusive marriage for nearly 25 years. We did not find out the extent of the abuse until after her death. At the funeral home, my brother saw my ex-BIL’s car. He walked up to it and told him to leave, including the comment, “If I’d have known what you were doing to my sister all those years we wouldn’t be having her funeral today. We would have already had yours.” We all know that she lost the will to fight and go on because of her life with him and she had been on a path of self-destruction for years with cigarettes – chain smoking as many as 2-3 packs a day.

A physician friend of another sister said after the funeral that he believed the cancer had spread to Kathy’s brain and that she was very near being confined to bed. He didn’t expect her to survive the summer, even with treatment. Although I still wish she had let us love her and take care of her during her final battle, I know that she went out with dignity and grace – taking charge of her life one last time. She didn’t want our parents to be burdened by watching her slowly die. Her own former in-laws had lost a child to cancer in 1984, and he was only 27. They were much younger then than my parents were in 2001 and she said it nearly killed them to watch him waste away and die. She thought she was sparing us all the heartache of the inevitable.

She left us with a lot of questions and unfulfilled wishes instead.

To my beautiful, amazing sister: I miss you terribly – your laugh, your smile, your infectious wit. You were such an inspiration to me to do better and to achieve more. I wish you could see your new grandson; he looks just like his daddy. You would have been an amazingly wonderful grandmother. I love you and I’ll see you again one day.

The first doctor in didn’t even suggest that Ron could or should go home as he still looked pretty bad that early in the morning. The other three doctors all came at just about the same time. The infection disease PA was first. She said that he was looking better and that Dr. Peterie (infection doc) would be by the afternoon and she passed Dr. Dan (cardiologist) in the doorway.

He said that Ron didn’t need to have a heart cath right now because of the infection but maybe in the future. The test results that he saw looked pretty good and the two EKGs he had were also good. He does have a skipped/dropped heartbeat but it’s not severe. He wants to see Ron in a week and asked Ron if he wanted to go home. Of course he said yes but it was up to me. I said if he continued to improve that I would be fine with it but if not, then I wanted him to not rush it.

Right behind him was Dr. Heady (ortho doctor). He was on his way out of town and said even if he wanted to operate on Ron that he couldn’t this week. Ron is already scheduled to see him on the 16th. He will decide then (maybe) if there’s still a need for more surgery.

So then the PA asked if we were going to go home after all and I said if things continued to improve. I said someone needed to write an order for the Foley to be removed though. LOL – they all forgot about it. Dr. Dan is the one who ordered it in but I don’t know who ordered it out.

The IV drip for the diuretic wasn’t supposed to end until 3:00 in the afternoon so I decided that waiting wasn’t such a bad idea after all. Dr. Peterie came in about 2:00 and was amazed at how much better Ron looked. He said Ron looked like a different person, to which he replied that he also felt like one. Doc said to go home and come see him in a week but to have blood work on Friday.

I could not believe how much total weight he has lost. He weighed in at 309 when he was admitted in March. He weighed 287 when he was discharged three days later (funny – in on Saturday night, out on Tuesday just like this time). He had been fluctuating between 276 and 285 since then and he just couldn’t seem to get below the 275 mark. He was admitted this time at 272 (hadn’t eaten much in several days since he was sick), lost 9 pounds the first night (down to 263) and lost 9 more pounds Monday night (down to 254). He hasn’t weighed 254 in years so although I know a lot of his loss right now is water, he’s also lost a great deal of muscle mass. He has very little belly and his arms and chest are much smaller. He was 252 this morning.

One of the diagnoses written on his discharge paper is “ortho-pancytopenia” and I’d never heard of it, so I looked it up. Didn’t find “ortho-“ but I did find Pancytopenia. It’s characterized by abnormal blood cells – white, red, and platelets. That made sense since that’s one of the things they’ve been telling us and thought it was from the Zyvox. I didn’t worry too much about it because Wikipedia says that a reaction to some drugs, including antibiotics. I'm just surprised that they would write something like that down and then not discuss it with us. I only found it on the sheet I'm to give the home health nurse. I made a copy for us, though.

I took him back to the ER last night because he thinks he’s gotten too much potassium flushed out of him and he’s having terrible muscle cramps, including his chest. They kept him long enough to make sure he was stable and then let him go. The ER doctor told him that he will have some more episodes of cramping but should level out. He’s lost so much weight so rapidly that his body is having trouble adjusting. His creatinine is up a bit but not dangerously.

Tuesday, June 3, 2008

I got to bed last night about midnight. When I left I told Ron's nurse that there was an alarm going off in his room but I didn't know what it was. I thought it was his IV pump. She said she'd go check it.

I came home, answered some email, and then went to bed. I was sleeping good when the phone rang at 3:15 - which makes a grand total of about 12 hours sleep in three nights. It was Ron and he was all in a tizzy. The respiratory therapist had not set the pressure correctly on the CPAP machine so he said it felt like his head exploded and his ears popped. He took of the mask and someone came in and gave him a hard time over it.Then he told them his hands and feet were on fire - worse than peripheral neuropathy pain normally is. He said they were ignoring him and he thought he was going to die.

He was so convinced last night that he wa's dying that he made me give him some paper so he could write out his will. I did just because he said he didn't want to leave any loose ends and leave me unprotected. We have a will but with the move I don't know what box of paperwork it's in if I needed it.

I called the nursing station at 3:20 and luckily got the nurse who had checked him in on Saturday night. I told her I didn't know what was going on but he felt really bad and I needed someone to check on him. I told her I was on my way as soon as I could get dressed. By the time I got here (a little before 4:00) she had been in to see him, got him adjusted in bed, gave him Dilaudid and Phenergan, and gave him some hot packs for his hands because he was chilling so much. She thought he was asleep but when I came in he was still on the verge of sleep (kind of like me right now). She is very nice. I talked to her for a few minutes.

Ron also said that the alarm was his bed and they didn't figure it out until 2:00 when he called them yet again to take care of it. He had just gotten the pain and nausea med when the nursing aid came in with the scales to weigh him (at 3:30 in the morning!). If he had been asleep she would have woken him up to weigh him.

I hope I can catnap between nurses and doctors being in and out. I already sent my boss a note and said I didn't think I'd be in. LOL, oh well... it's only money.

Monday, June 2, 2008

Ron really hurt my feelings. One of the times he called me I was sitting in the driveway at home (I went to pick up his insulin and glucose meter) and so I asked him if he had gotten the flowers. He said yes and that he didn't know they were from me because the card wasn't signed. And - the clincher - said it looked like something Karen (his ex-wife) would do. I said didn't you read the card????? He said yes but it just didn't register that it could possibly be from me and Karen is the one who does things like that. I was cut to the quick.

So I hung up the phone, got his stuff, and came back to the hospital. When I got into his room he tried to explain but I was having none of that at this point. I was looking for the card but couldn't find it(I was going to tear it up after I read it to him) and when I went to move the flowers they fell into the trash. He said "oh don't do that"and I said it was an accident but it was a good place for them.

I finally found the card at the bottom of the trash so someone (he says the nurse) threw it away. So I read it to him and said "oh yeah, that sounds like something Karen should be saying to you." He tried to explain himself again and I said that his other wife could buy him flowers from now on and left the room. I was very hurt. He ended up crying and said if I didn't forgive him it would break his heart. He said I'm the only one who does care about him and he really shouldn't have said that Karen was the thoughtful one.

Of course, I forgave him and said I was over it. He said I'd never be over it. Maybe, maybe not but he'll never know. He's the one that will remember how he stuck his foot in his mouth. I did take the flowers out of the trash because he asked me to. I very nearly broke the whole thing.

I’m so ticked right now. Ron’s better today but in a pissy mood and I don’t blame him. His foot bandage came loose yesterday so we had one of the nurses look at it. He said the wound care team didn’t work weekends but there was an order on the chart for them to come this morning. When I left at 9:30 they had not been there. The bandage the nurse put on also came loose and he was oozing on the bed. He pushed the call light (he’s right outside the nurse’s station) and after about 10 minutes I opened the door and said something to the clerk. They had been laughing and chit-chatting the whole time and I was getting irritated. She said someone should be floating around but I thought someone should have at least acknowledged his light. His nurse right now is a non-English as 1st language nun and although she’s very nice she doesn’t communicate adequately.

About the time the nurse got there so did the PA from the infection doc’s office. She looked at it and said the seal on the sponge is good but the rest of the bandage is what was loose and because his new skin is so thin there that is what was oozing. She put a bandage on to keep the integrity of the wound intact until the wound team could come.

Also, I had asked for a clean gown for him when I got there and noticed that one of his telemetry leads was actually stuck to his gown and not his body. It was off all night (I guess someone told him that) but the overnight people did not even come in to see what was going on. I told someone this morning that it was off and it took about 30 minutes for someone to come and put new patches on.

On my way to work I stopped in the gift store and bought Ron a little flower pot that looks like a VW van hippie-style from the 60’s with flowers in it. It was really cute. I wrote him a little card that said “Chin up lover boy; we will overcome this, too. We may not have it all together but together we have it all.”

Before I even got to work Ron was calling me all upset because they’re not checking his sugars like they should and he’s not had one dose of insulin although I told the admitting nurse that he took Lantus twice a day and I know she wrote it down. The weekend crew took his sugars several times a day and the highest he had was 194 last night. This morning it was 145 fasting and it’s only because I’m choosing a low carb diet for him. I assumed they would give him insulin last night after I left but he said they did not. The nun said there are no orders on the chart for insulin. The on-call doctor probably forgot to say “insulin” when he was approving all the meds and then no one has thought to say “oh this man is diabetic maybe we should check on his insulin requirements.” Maybe they assume he’s diet controlled (which his diet control is good right now but that's not always the case).

So he pushed his call light again and could hear them laughing and having a good time at the nurse’s station. I don’t know how long it was before the sister came back in. She was going to call Dr. Alvarado’s office to see if she can get it straightened out and Ron also called them. I tried to call the director of that nursing unit but haven’t been able to yet. I was just being directed to the wrong person and since I was on the phone doing personal stuff during business, I opted to wait a bit before I called back. I was going to take a break and call but Ron called me back and was very upset at the treatment he was receiving and asked me to come back to the hospital.

When I got back to the hospital I called the supervisor over that nursing station, explained who I was and what I wanted, and then asked her to come down to Ron's room. Once she was there we explained everything that had gone on from our perspective and she did some investigating. She came back with Ron's chart and showed me where the admitting doctor (who doesn't know Ron) discontinued his insulin, so when the nurse called and talked to the other doctor (who doesn't know him either), he just said go with what the admitting doctor ordered. But, someone should have and could have communicated this to us and we would have called the doctor's office ourselves to get it straightened out, or we would have talked to the doctor when he made rounds that morning to explain the need for insulin. (After it was all said and done, the director brought him in a plant in the same type of container that I'd already bought him flowers in.)

I had about 4 hours of sleep Saturday night and even less last night. I’m worn out, stressed, and my nerves are at the surface of my skin.

The cardiologist was in and said he wanted to look at the thallium stress test from last Wednesday and the echo from the week before. Ron may need a heart cath but he doesn’t think he needs a pacemaker right now. He’s going to give him Lasix IV every hour to try and get some more fluid off and he needs to have another chest x-ray. He has lost 7 pounds since Saturday night and 47 since Easter. He weighed 262 this morning but he has absolutely no muscle left.

Sunday, June 1, 2008

This makes hospitalization number 4 since February 18 - two foot surgeries, two episodes of congestive heart failure, and one episode of kidney failure (got to have this one in conjunction with his first trip to the hospital).

Since Ron's been on this new antibiotic he's had a few problems including some elevated blood pressure and some tightness in his throat after he takes it. He got sick enough the week before Memorial Day that we even stopped the medication for a few days. I started him back on it last Sunday. By Thursday he was feeling bad again and his blood pressure was creeping up. Friday he felt OK but not good. He didn't say anything to his visiting nurse so she didn't make any notations. Saturday morning he was very nauseated so he took some PeptoBismal (that would make me hurl just because it's so nasty). A few minutes later that came right back up.

After a while he said he was feeling a bit better so he took his morning pills except for the Zyvox. About 15 minutes later he was vomiting again so I'm not sure how much stayed in his system. His blood pressure was 205/98 or something else equally disturbing. He ended up just going back to bed. Our little town was having their annual spring festival and he wanted me to go enjoy the afternoon so he didn't really tell me how badly he felt. I was gone about five hours and when I got home I could tell he was quite a bit sicker.

He said he'd called our family doctor and talked to the on-call doctor earlier. I said I was calling the kidney doctor instead. Of course, his was not on-call but the doctor who took my call said to take him to the ER to be checked out. Ron did not really want to go but I insisted that he at least go to be checked. By the time we got there he was pretty sick. We got into a room by about 6:50 and they started drawing blood, taking a urine sample, and chest x-rays. About 9:00 the ER physician's assistance came in to talk to us and examine Ron. She said she was going to consult with the ER doctor and they'd be back. A little bit later, he comes in and says that Ron is in heart failure again and that they're going to admit him.

We finally got to a room about midnight and poor Ron was really sick. The nurse on the floor was very compassionate and called the doctor (our family on-call doctor again) and got orders. One of the things they decided was to start a catheter (ouch) and give him Phenergan for the nausea. Man, within five minutes it was lights out for him! I'm so glad because it helped him not remember the catheter part of the night.

I left and got to bed about 1:30 this morning. At 6:30 this morning my phone rang and it was his nurse. She said Ron's heart rhythm had changed about 5:00 am and that she'd called the cardiologist again. The cardio doc said nothing by mouth until he was examined. They were thinking that Ron would have to have some kind of heart procedure today, and after I got there I discovered they were considering a pacemaker.

The cardiologist on-call was not from Ron’s doctor’s group so when she came in to see him she decided that she wanted to do a more conservative treatment and let his own doctor decide tomorrow what to do with him. She said his sinus arrhythmia could have been caused by a number of things, infection in his foot being a primary concern. She did not want to rush into putting in a pacemaker today if the cause of the problem was something other than a true heart problem. She also said that because his platelet count is low he might have trouble clotting and the infection in his blood stream could deposit an infection at the pacemaker site. Also, he’s anemic and that’s another concern. She had the lab do some more blood work and determined he did not have a heart attack during the night, as was the initial concern. She’s also ordered some testing on his thyroid as that can also cause irregular heart beat. Finally, since he’s not getting enough oxygen (as another possibility) she put him on oxygen today.

The heart doctor, infection doctor, and foot doctor should all come to see him tomorrow. I plan on going in as early as I can drag my tired rear out of bed and into the hospital. I stayed until a little after 9:00 tonight and then had to get gas on the way home. I didn’t want to have to do it in the morning when I know I’ll already be rushing.

This is sure tiring. I honestly don’t know where I’d be without my faith. I am physically just drained and not sure how much more in my own self I could take. If I had no responsibilities I think I’d be tempted to just get in my car and run away. But I love my family and I would miss them, so I wouldn’t do that.

The financial aspect is another thing that just goes through my head over and over. If he does this, I can do that; if he has to do this, I'll have to do that. What can I pay this on, who do I owe that to, etc. It's not something that I'm worried about or stressing over, but it's something that I have to be totally aware of and in control of all the time. I just can't let it get ahead of me or I'll get behind on things and totally lose sight of how to survive all this.

Keith was in the room this morning when the doctor was asking questions and talking about different things. After she left he asked me how I possibly keep all those details of what, when, where, and how straight in my mind. I don’t know – the grace of God I suppose. I just rattle off the facts.

I’d like to go to bed right now but I know I’m still not relaxed enough to sleep. I don’t dare take anything because I have to get up by 5:00 so I can get to the hospital by 6:00. I need to try and get to work by 9:00 so I can leave by 5:00 to go back to the hospital. My SIL said it sure was nice that my work was able to “give” me so much time off. LOL, it’s not like they’re “giving” me anything. I’m taking leave without pay for every hour I’m off with him. I don’t know what she thought I’ve been doing for nearly four months – playing tiddly-winks or what. Stupid woman. LOL, I mean that with all the love in my heart that I can muster tonight.

I think I'm just really tired. I'm tired of having to think so much and having to keep track of so much. I don't want my kids to think I'm dumping on them (and I know at least two of them read this) so I'm really not complaining.

So, that's all the wonderful news from our household. Maybe I'll get to post something more positive tomorrow. We can always pray so.

It's hard to believe that I haven't posted anything in five days. There has been a lot going on. I'll start with Wednesday's update (5/28).

Ron's doctor appointments went well. He had a thallium stress test at 7:30,followed by a visit to the infection doctor at 11:00, and then finished up with the foot doctor at 1:30. The infection doctor wants to see him every week and to keep a close eye on his blood work. He is anemic and has a serious calcium and vitamin D deficiency. His platelets also keep fluctuating and they're below normal most of the time. Overall I think he feels better but still not good. He doesn't go back to the foot doctor until June 16, so that's nice.

Next week he has a heart function test on Tuesday (more on this in the next post) and sees the infection doc on Wednesday. He'll probably see the infection doc again on June 11. I'm sure getting worn out. I hurt my back Wednesday lifting the scooter into the car. I had to load/unload/re-load a total of seven times. We really need a carrier to attach to the back of the car to make it easier on me. Just don't have the moolah to do so.